Meds.

Several of you have emailed me asking for a list of medications that I take.  Only one of them is a medication actually and the rest are supplements, but here you go.  I definitely feel a difference when I do not take my handful of pills each night and these are all of the things my neuro has recommended that I take:

4.5 mg Low Dose Naltrexone
15000 IU Vitamin D3
2500 mg Omega-3 Fatty Acids (fish oil)
15 mcg Vitamin B12
1 capsule Acidophilis
Multivitamin
1200 mg Calcium

Before I started taking Low Dose Naltrexone (or LDN) about 3 years ago, some part of my body was always numb.  It was usually my left leg that felt heavy and numb, and for a lot of months, I found myself having to sort of drag it along.  But I literally never deal with numbness anymore.  I am amazed.  It also helps a lot with energy level.  If you want more info on LDN, I recommend http://www.lowdosenaltrexone.org/.  LDN has shown amazing results with all kinds of diseases, as well as with infertility.  It's also incredibly inexpensive.  Anyway, hope this helps. 

Mothers Day

Mother's Day used to be a very difficult day for me.  My mother was not a super-star role model.  Anyone who knows my story knows that's an understatement.  :-)  And so it was always a holiday I sort of dreaded, not because I felt bad for myself, but because I didn't like others feeling bad for me.  I've always hated being pitied.

Now, having been blessed with children of my own, Mother's Day is something I look forward to and love.  Jake was at work that morning and I really didn't expect the kids to know at all that it was Mothers Day, but sure enough, they showed up bright and early and brought be breakfast in bed that they made all by themselves.  Two pieces of toast with butter and a bowl of cookies and cream ice cream.  Best breakfast I ever had.  I sat there and ate my breakfast truly grateful for these precious souls that have been entrusted to my care.  Oh how blessed am I.  I didn't think to take a picture until after my food was all gone, but you get the point:) haha.

Then when Jake got home, of course he spoiled me rotten.  Always does.  I have so much to be thankful for.  My heart just overflows with love and gratitude to my Father in Heaven and I cannot help but get teary when I think of all the blessings in my life.  

Jonah's Stuffed Animals

Jonah LOVES his stuffed animals and he loves bringing them to bed with him...and every morning, he wants to carry them around.  He keeps adding more and more to his collection, and this morning, this is what he brought out of bed with him.  Cutie. 

PLEASE take 8 minutes to watch this video...

...and pass it on to anyone you know who has MS.  Thanks!

http://www.youtube.com/watch?feature=player_embedded&v=VN-YC8JPZ9M

Sunny California, Here I Come!

Well, it's been an interesting few months to say the very least.  Our family has gone through some significant changes, all for the best, and we've done a lot of learning and growing together.  We also went on vacation (see above pictures) for 10 days to New Mexico and Colorado which, though it was A LOT of work with 4 small children, was a blast. 
We also contacted the clinic in Southern California about treating my CCSVI with stents.  For more information, see www.synergyhealthconcepts.com. I talked to the coordinator today and right now it costs $10,500 (not including stents), but they are going to start billing insurances soon.  So, they're going to call me next week after they've contacted my insurance and get me scheduled.  I know that some docs think stents are dangerous, but in my mind, having my blood not flow is also dangerous.  Feeling fatigued, dizzy, and in pain all the time is miserable, and the lack of blood flow is probably leading to more lesions on my brain and spine.  That's dangerous.  I guess Jake and I are feeling like stenting at this point is the lesser of two evils, and we feel good about moving forward with it.  We are going to continue to research and study on the subject, though, and if you have any information that you think might shed some light, good or bad, please feel free to share!  In fact, share in the comments section, so that more people than just me will see it.  We'll keep you posted, but right now, it looks like I'll be going in May or June.

The Break Down.

Well, I talked to Dr. Hatch yesterday afternoon and he made it very clear that there is nothing more he can do for me.  He told me he's not willing to stent my veins and that he doesn't think my veins can handle much more.  Felt like someone punched me right in the stomach.  Jake came home from work at 11 last night and I just lost it.  I wept and wept while he held me for a long time.  I had held it together all day but I couldn't hold it together any longer.  It is difficult enough to have a husband, a home, and 4 children ages 7 and under to take care of while one feels normal and healthy.  But to try and do it all with very little energy and a whole lot of pain and dizziness is getting to be too much.  Something's gotta give.  I only have so much energy and there is so much to be done.  It's causing my children to suffer because I don't have the energy to be extra patient with them, or run and play with them.  It's not fair to them.  My greatest joy comes from taking good care of my family and home, and I feel like a failure every second of the day.  I had lost all hope and felt like there were no more answers for me.  After I finally got it together and took some deep breaths, Jake showed me some research that he had done on his breaks at work.  He told me that we are going to get someone to help with the housework 10 hours a week so that I can spend the energy that I do have on my children.  This morning, he called from work and said that there was a lady coming to look at the house and discuss a plan.  I am going to have to fight my tendency to feel guilty for not being able to do it all.  Before bed, Jake gave the most beautiful prayer, acknowledging God's hand in our lives, knowing that He has a plan for us, and praying for us to continue to be guided and directed as to what to do for my health.  I am so blessed to have Jake.  I am married to my best friend in the world.   

Email from my sweet husband:

the following is a dr that does stent the azygos.  he claims that you have to place one that is 20% larger than the azygos.

i think he's our guy!

http://www.southcoastveincare.com/joseph-hewett.php?tid=1

here's some info from a conference he spoke at

http://www.reformedms.org/ms-ccsvi-news/venous-stenting-and-ccsvi-dr-hewett-presentation-january-29-2011-seattle

conversation talking about the medicine i mentioned

http://www.dvtforum.com/index.asp?forumID=17615&subject=Internal-Jugular-vein-clot
________________________________________________________________________

Anybody heard of Dr. Hewitt?  Jake is convinced we need to go to California so that I can be treated by him.  PLEASE let me know if you've had any experience with him.

Hmmmmmmmmm...

Well, I felt GREAT for 3 days.  It was wonderful.  Again, my brain was clear, and again, my energy was back up.  The dizziness and balance issues were significantly decreased.  And then...I woke up and was stumbling all over the place, dizzy as ever, and slammed right into the wall.  Fun fun.  Pretty sure those darn veins closed yet again.   What to do, what to do, what to do.  The Dr. is calling me tomorrow so that we can discuss our options on where to go from here.  He's really worried about stenting, for several reasons, including that scar tissue builds up around the stent, which could end up closing the vein even more than the original stenosis.  We'll figure it out.  Continuing to pray for guidance as to where to go from here.  Pretty frustrating, but it could be worse.  I really do have way too much to be thankful for to be complaining.  I look at my sweet, sweet husband and the four little miracles that we've been blessed with, and it's hard to feel sorry for myself at all.